Is it possible that we will stop taking medicine if we are on remission for a long period of time? Some posters here, i belive are not taking any drugs anymore when they are in remission, taking only supplements like probiotics and other supplements.

My GI wanted me to take maintenance medicine, either Asacol or Colazal, for the rest of my life. I looked up the possible side effects for maintenance medications such as Asacol, Colazal, and Lida. All harm the kidneys. I figure I'd rather risk losing my colon than my kidneys. I'm not taking any maintenance medicines.Joy - 47 yrs and counting

yeah.. you have a point... having problems in kidney are more expensive and serious than having UC... i hope that i will be in remissiom so i will stop buying Salofalk.. coz it cost me a million... :(Diagnosed with UC on 2007. Undergone Fistulotomy on 2005. Taking Generic Asacol 400mg 3X a day... "HEALTH IS WEALTH"

The decision is ultimately yours. Your family, your knowledge, and your confidence must be taken into account with the decision. Refusing to take medication for anything that may require it is very very dangerous.

You risk permanent injury, harm to your family and others, hospitalization, even death by making such a choice. Those who have made the choice realize that it is a big decision and should have made such a choice with the best information and consideration of the aforementioned variables.

You are not just taking your own life into your hands but the lives of your family and the effect it may have on them too. Probiotics, supplements, knowledge, diets, etc. are in no way shape or form a substitute for proper medical treatment.

Don't go skydiving if you feel you are not properly educated in every aspect of getting out of that plane and making sure you make it to the ground intact. If you are not 100% sure about it, sometimes it may just be better to stay on the plane...Diagnosed w/ Ulcerative Colitis in 1995

I agree with warrior, you have to be confident in knowing your body and the risks of going drug free. And I truly believe that going drug free should ultimately be discussed with your GI, or whoever is handling your UC. That is what happened with me personally, and I had discussed coming off meds with my GI, as he knew the side effects were particularly bad for me. (not that they arent for everyone, but I think some people can handle or deal with them better than I could) I hope you make the right decision for you.

Yes, you can cease taking medication and run the risk of severe illness and surgery. You will have to decide if that is worth it to you. The risk of having surgery while ill is that it's much harder to recover from and can be a much more complicated surgery. People have to take maintenance meds for all kinds of problems; heart disease, high blood pressure, cholesterol, etc. Medications tend to extend life as can be seen in the latest statistics on longevity. Bottom line, it's your decision.

suebear said...Yes, you can cease taking medication and run the risk of severe illness and surgery. You will have to decide if that is worth it to you. The risk of having surgery while ill is that it's much harder to recover from and can be a much more complicated surgery. People have to take maintenance meds for all kinds of problems; heart disease, high blood pressure, cholesterol, etc. Medications tend to extend life as can be seen in the latest statistics on longevity. Bottom line, it's your decision.

Sue

That seems pretty severe. Just because one stops taking their meds during remssion does not mean that the disease will come back so severe that you may need surgery. In fact, you can be on meds and the disease can spread to the point surgery is necessary. It is an unpredictable disease

Maintenance meds for heart disease is entirely different than UC and I think you are comparing apples to oranges. Heart disease does not have flares and remissions, it is usually permanent damage done or the body having too much cholesteral.

Dx: UC Proctitis 2006

Meds: None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.

Maybe I didn't make my point clear. Reseach has indicated that the best way to keep UC in remission is to take maintenance medication. If you want to take the risk of increasing the chance of flares without medication that is your choice. However, if you choose to go that route it's important to know what the risks are, hence the note about potential surgery. Like you said, it's an unpredictable disease.

The other point I was trying to make was that the risk for taking maintenance meds for UC is quite low. I believe that taking UC maintenance meds (5ASAs) is far more of a benefit than a risk. I wholeheartedly agree that everyone should make decisions for their own care but those decisions should be made only after doing extensive research. I was not making an apples to oranges comparision. Medication for heart disease and other ailments is there to extend life and reduce the risk of surgery. It's the same with UC.

Of course you can stop taking medication. No one is going to hold you down and force it on you. It's your body, your decision. You'll probably even have periods - long or short - of no symptoms. Just be aware that when you next flare (and the odds are about 99% that you will), it could be harder to control.

We each have to decide what course we want to take.

Judy

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Avascular necrosis in both shoulders is my "forever" gift from Entocort.

I think what we med-lifers has learned is that it's not worth the agony or emotional torture to go without when many of us are able to control our symptoms keeping inflammation at a minimum.

Many have a tolerance level of symptoms that are actually a slow simmer of inflammation or active inflammation....but it's not "bad enough".

It's easy for us to continually raise the bar for what we're able to tolerate.

Some can do fine without meds.....others cannot. I personally am intolerant of symptoms and am not willing to be slammed against the wall needing immediate intervention just because I've made the choice to stay off meds and suffer the indignities for long periods until it's too late.

Withough making judgements (which is difficult), I have come to realise we have much control over our choices. Some may also go without meds just to that it's to the point of having one's colon removed...beyond their control.

It's more complicated than just going med free.....there is still a constant focus on our butts, what we consume, what alternatives to consider, the hopes of a cure other than surgery, etc.

I agree with sue...bottom line,,,it's your choice, but if one expects immediate treatment and a fast result from meds if one's gone too long without intervention...or worries incessently because of symptoms...it might not be worth the "natural" way.

quincy

*Heather* Status..Asacol (3 twice daily); flaring since Dec 22, now tapered to every 3rd nite as of Jan 13

Some people are either allergic or non-responsive to traditional oral RX (as I am) and RX is not an option so I rely on the natural route, bee propolis, omegas 3-6-9, fibre supplements, probiotics, vitamins A, C-Calcium ascorbate and chamomilte tea, but I've also altered my diet and exercise regularly, this combination has given me a lot of relief but I'm not in full remission (as I have some complications with my IBD) but many do well with just the natural route and/or altering their diet...so it is possible, and how severe your disease is may factor into it as well.

:)My bum is broken....there's a big crack down the middle of it! LOL :)

NuffinButtTrouble said...Drug free is possible, but only because I have to maintain a strict diet. It's not a cure and it's difficult at times because I can't eat what I want to eat...but at least it works for me.

In '95 I was having trouble with the pentasa after being dx'd. It was determined that I was allergic to it and having complications with my other treatment drugs. I am a farmboy from an earthy family that relied on natural remedies so it wasn't hard for them to support my "cold turkey".

There were not a whole lot of options for me back then and I was basically told by my GI at the time there wasn't much else he could do. I wasn't responding positively to the mesalamine or prednisone. Going natural was born of necessity and the desire to alleviate my symptoms so that I may live my life. Some form of primitive self preservation had kicked in and I started learning as much as I could. Trail and error the hard way. No forums, no advice columns, no magic diets, no medicine that worked for this mysterious disease. I felt very much alone and scared.

Back then every flare was scary, every remission only just a reduction in symptoms. However, 14 years later every flare is still scary (to a much lesser degree) but my remissions are complete and long-lasting. I have gone from 8-10 bad flares a year to 1-2 now. I am fortunate to have reached this outcome and pass no judgement on any decision good or bad a person makes concerning their personal welfare. Do what works for you! In summary, every decision has an effect one way or the other that must be made with the best information and utmost realization of possible outcomes.

My decision as a scared young man 18 years of age with a mysterious disease still holds true as a 32 y.o. adult with a mysterious disease.

Moral of the story is that these decisions rest upon the individual making them and the path they decide to take through their journey with UC.Diagnosed w/ Ulcerative Colitis in 1995

ucwarrior said...Refusing to take medication for anything that may require it is very very dangerous... ...You risk permanent injury, harm to your family and others, hospitalization, even death by making such a choice.

According to my GI (who I saw for my second flare), people who have Colitis on average have a smaller chance of getting a flare if they take maintenance medicine, and that is it. He can't guarantee anything. He can't guarantee that I won't flare if I take maintenance medicine or that I will flare if I don't take it.

Of course everything is individual when it comes to this disease. For me:

1. Maintenance medication is not a guarantee that I won't get another flare.

2. Taking maintenance medicine has risks. It can destroy the kidneys.

3. There are other things that work better than maintenance medicine for me. I took Colazal when I first got my third, and latest, flare. It did nothing. I then ate anti-inflammatory foods. The anti-inflammatory foods helped immensely. So did Probiotics mixed with water put up the butt. Why take something if it doesn't work and harms the body?

4. My colon is in perfect health when I'm not flaring. My GI said my colon looked remarkable about a couple of weeks after the second flare. He said that what had looked like dog meat three months ago was now 98% healed. I plan to get another colonoscopy in a few months to see how my colon looks after this flare, which wasn't nearly as bad as the second flare in which I had to take Prednisone. (I did not know back then what natural methods worked and did not work for me. Can you believe I was drinking a quart of juice a day, and I'm fructose intolerant?)

5. I get warning signs before getting a flare (my BMs get smaller). I had warnings before getting my third flare. I was on antibiotics on and off for a year prior to the flare. My BMs were getting smaller as a result. And then I started becoming lenient with my diet. I was occasionally drinking HFCS beverages. I am now taking cranberry supplements, and I'm avoiding HFCS completely.

6. It might be more difficult for me to figure out what natural methods work and don't work if I'm taking maintenance medicine. It might be more difficult to notice any warning signs.

Of course, everyone is different. This disease is individual. Some of us do better without maintenance medicine; others may do better with it.Joy - 47 yrs and counting

RyanF said...When those who are in remission go into remission-- do you feel like your regular self? I ask because ever since I was diagnosed (developed the symptoms) I have never had my ulcer/colon feel 100%.

Yes. I feel like my regular self. It takes me awhile to not be anemic anymore though. And it takes awhile for my colon to recover completely. I gradually add more foods to my diet as it recovers, and I gradually stop taking Beano and Lactaid. The mistake I made before getting my third and latest flare was that I started drinking HFCS beverages again. HFCS isn't digestible. I won't make that mistake again.Joy - 47 yrs and counting

I say no. When I tried it, it sent me into a tailspin of UC horrors, which led to me being on much more dangerous meds than before. I did great on Asacol with the occasional Rowasa- so great that I stopped the Asacol. I did continue to use Rowasa nightly. But then I wound up very ill, on numerous courses of pred, on Imuran, on Remicade.... plus, I'm not willing to radically alter my diet for the rest of my life. So for me, at least, I'm cool with meds! Honestly, if you can go off meds & live flare-free, then that's great, but I think you must have a pretty mild case of UC for that to be true.

Eva Lou said...Honestly, if you can go off meds & live flare-free, then that's great, but I think you must have a pretty mild case of UC for that to be true.

I would hardly call my flareups mild. But I don't think I'm predisposed to Colitis. Perhaps this is an important factor into whether or not someone needs to take maintenance drugs. I believe my Colitis is due to years of eating nothing but chocolate, drinking nothing but HFCS beverages, and taking tons of antibiotics. So there is still hope for my condition yet.Joy - 47 yrs and counting

Eva Lou said... plus, I'm not willing to radically alter my diet for the rest of my life. So for me, at least, I'm cool with meds! Honestly, if you can go off meds & live flare-free, then that's great, but I think you must have a pretty mild case of UC for that to be true.

Eva- I mean this in the best of ways... but I was dx'd in 1995 with severe left sided UC. There was absolutely nothing mild about what I went through. Please consider yourself fortunate that you had a good response from the medications available, not everyone has had that luxury. Please don't look down on those who have not had such fortune and options you have been awarded.

Some of us are allergic to many of the beginner and intermediate UC medications and try very hard to remain off the advanced drugs.

Also there are some of us out there (me included) who do not have health insurance or the money to afford such medications. So we make do with what we have. I'm not on this forum to promo some fancy diet or magical cure-all or sell my med-free ways. I'm here trying to give real-world advice for what has personally worked for me in the past.

Some of us are, in fact, forced to "radically alter our diets for the rest of our lives" just to finish post grad work, stretch the paycheck, and juggle an already costly disease while still putting food on the table for the family. I'm sorry but your response is very judgemental, however I take no offense. I felt as if you had said, "If they can't afford bread, let them eat cake..." That's not fair my friend.

Before this post is edited for content I am not attacking anyone, just making a point that during these rough times right now there are those who must do what they can based on their financial status to remain well. These are choices that are independent of UC severity.

I do agree with ucwarrior... the reason why i asked this question is because, i dont have the money to have a maintenace for a lifetime... I am a breadwinner.. and life here in the Philippines is different in US.. Its more difficult...Iam still hoping that someday.. if Iam fully into remission i can stop buying this expensive medicines.. Diagnosed with UC on 2007. Undergone Fistulotomy on 2005. Taking Generic Asacol 400mg 3X a day... "HEALTH IS WEALTH"